0000000000121998

AUTHOR

Lisa Bell

showing 4 related works from this author

Burden of disease suffered by patients with Morquio syndrome type A: results from a patient-reported outcomes survey

2014

Burden of diseaseMorquio syndromePediatricsmedicine.medical_specialtybusiness.industryEndocrinology Diabetes and Metabolismmedicine.diseaseBiochemistryEndocrinologyGeneticsPhysical therapyMedicinebusinessMolecular BiologyMolecular Genetics and Metabolism
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Burden of disease suffered by caregivers of patients with Morquio syndrome type A: results from a self-reported outcomes survey

2014

Burden of diseasePediatricsmedicine.medical_specialtyMorquio syndromebusiness.industryEndocrinology Diabetes and Metabolismmedicine.diseaseBiochemistryEndocrinologyGeneticsmedicinePhysical therapybusinessMolecular BiologyMolecular Genetics and Metabolism
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Burden of disease in patients with Morquio A syndrome: results from an international patient-reported outcomes survey

2013

WOS: 000335253700001

AdultQuality of lifemedicine.medical_specialtyActivities of daily livingInternationalityAdolescentDiseaseShort staturechemistry.chemical_compoundWheelchairQuality of lifeElosulfase alfaMedicineHumansGenetics(clinical)Pharmacology (medical)ChildGenetics (clinical)FatigueMobilityMedicine(all)Pain measurementPatient-reported outcomesbusiness.industryData CollectionResearchMucopolysaccharidosis IVGeneral MedicineGaithumanitiesEQ-5D-5LchemistryWheelchairsJoint painPhysical therapymedicine.symptombusinessMorquio A syndromeOrphanet Journal of Rare Diseases
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The Burden Endured by Caregivers of Patients With Morquio A Syndrome: Results From an International Patient-Reported Outcomes Survey

2019

Abstract This international survey performed by direct personal interview or mail evaluated the global burden among primary caregivers of patients with Morquio A syndrome. Collected outcomes included self-reported time spent on caregiving, proportion of daily activities (from the Mucopolysaccharidosis Health Assessment Questionnaire) requiring caregiver assistance, and how the patient’s age and wheelchair use affect these. In addition, the impact of caregiving on the caregivers’ relationship with family and friends, physical and mental health, and employment status and income was evaluated. Caregiver burden increased with disease progression. Adult patients always using a wheelchair require…

medicine.medical_specialtycaregiversbusiness.industryEndocrinology Diabetes and MetabolismeducationInternational surveyMorquio A syndromewheelchairsdisease burdenQuality of life (healthcare)quality of lifePediatrics Perinatology and Child HealthMucopolysaccharidosis IVMedicinebusinessPsychiatryPersonal interviewMorquio A syndromeGenetics (clinical)Disease burdenmucopolysaccharidosis IV
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